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Lyme Disease Board Index

Stacey, Charlotte Hall, Maryland - Age 38
Infected 1993. I was diagnosed with ring worm that year by my internist. Funny thing is the only reason I had that rash checked out is because the nurse at work told me to go to the doctor because it looked like it was from a tick. Nope he said ring worm and he was the doctor. I got a copy of my medical records last year and my chart says possible ring worm. All my problems started shortly after that rash...

In the beginning it was the fatigue, numbness, constant sinus infections that put me down for 2, 3 days to a week, and bouts of shaking, out of it feelings. Sometimes they diagnosed viral infections and that was the diagnosis the time I could not walk. I was also having ringing in my ears, high pitch sounds and cracking, musical/audio hallucinations, shooting pains, jaw pain, skipped heartbeats, rib cage soreness, other pain that came and went, knee pain, brain fog, insomnia, balance problems, head pressure, shooting pains in eyes, and my face was started breaking out and very sensitive...

I could actually feel the sinus infections coming on and after numerous visits to my internist decided to just take amoxy when I felt like I was getting sick. My doctor never really understood how bad I felt when this stuff happened so I decided to save myself the doctor fee since my mom always had amoxy on hand in case the farm animals needed it. This probably did help keep the lyme at bay some what and doctors would have never figured it out anyway. Although I should have long before I did especially since I lost my horse to lyme in 1992.

My symptoms continued but were manageable. They were gradually getting worse and in 1999 we started looking for property. We took many walks in the woods and I could barely make those walks… The breathing problems had started and I was so, so tired.

By 2000 we had started construction on our new home and my husband and I played general contractor. I was not well and literally could not help with the manual labor which was not me. I kept thinking I was so out of shape… At times I would think it was something environmental or the new vitamins or maybe I was allergic to alcohol. I also could not stand the smell of perfume or anything chemical.

The chest pain/breathing problems were worse and I now had nausea that came and went, my legs hurt, neck pain, rashes, head pressure... I once again visited the emergency room that fall because my internist thought the worst when I was having numbness in my left arm, chest pain and high blood pressure... I was so used to this that I would have not made the ER visit but my periodonist was very concerned about my high blood pressure and advised me to call my doctor as soon as I got back to work. Needless to say I was diagnosed with yet another viral infection. I swore no more doctors or ER visits that I would just deal with it and I did.

By 2002 I felt like death warmed over. My legs never quit hurting, my neck stung/hurt badly and I kept thinking it was from looking at the computer screen wrong. My cheeks and face hurt, I was missing much more work and my teeth hurt. I felt like I had a constant hangover. I was weak, my shoulders hurt, stiffness, legs shook, left arm would go totally numb at night, my hands hurt and I could not even squeeze a windex bottle.

My ankles hurt, the pressure never let up in my head. That summer I had a really bad case of poison and was given prednisone for two weeks. Shortly after things got even worse. I do not know if it was the prednisone or a coincidence but I started having problems with ovarian cysts rupturing. I was told my nausea and leg pain was due to the cysts but my doctor never understood why I had pelvic pain but other wise I was told I was perfectly healthy.

By early 2003 I had started researching MS, cancer... you know the routine. The ovaries were still a problem. I became a lifetime movie junkie and could only clean house during the commercials because I was so weak. My husband once told me he was tired of seeing me watch ***** flicks every weekend. I could not stand in line at the grocery store much less carry the groceries in. I was so afraid that I would die before I ever knew what was wrong.

I still had all of the prior symptoms but they were more severe. I had problems swallowing; my muscles twitched like fireworks were exploding in my body. My heart raced, I could barely lift a small pot of water, the front of my neck had a weird bruise that stung, and I felt like worms were crawling in my forehead along with the constant shooting pains that I thought would kill me. My head felt swollen, it felt like bees were flying in my ankles, felt like things were crawling on my body and sometimes like I had run into a cob web. I felt like I would pass out even sitting down. I had a hard time holding my head up to watch TV. I would have to take a break from doing simple things like the dishes. I noticed I constantly sighed.

My neck felt like it had an electrical charge with the pain, breast pain and bruising, bruising on front of lower legs, I was too weak to blow dry hair, my gait felt different and my legs felt really weird like rubbery, the bottom of feet hurt, twitching in my head, constant nausea, and ovarian problems continued with pain plus weird noises. I had burning sensations in my legs, total terrible body ache at times, weird non healing areas which I never scratched or hurt. Shooting pains in fingers, numbness worse in feet, hands, big toe… I felt like there were short circuits in my head, my arms jerked, the brain fog was so bad I was afraid to drive... basically my mind was shot... and I now know that my central nervous system was being attacked.

My husband kept telling me to go back to the doctor. For what… I kept researching. Then in June 2004 our friend called because his dog was sick. I knew right away Scrappy had lyme as my dog was infected in 2001 and never the same. Our friend called back that evening to tell me I Scrappy did have lyme. That very moment a light bulb went off in my head. How stupid of me to never think of lyme.

My extensive research began and I knew without a doubt I was infected. I made an appointment with my internist knowing full well he would think I was crazy. He tested me using the Elisa and ran other blood work. I remember him saying just before he left the room “are you sure it is not depression – again”… I also now know it was lyme causing this and do not think an internist has any business diagnosing a patient and administering antidepressants.

Anyway, naturally the Elisa was negative but my blood sugar was high. The doc thought I was a diabetic and told me my symptoms were too wide spread for it to possibly be lyme. My glucose stuff was normal so I requested a Western Blot which was also negative. He then called his neuro friend and made an appointment for the following Monday. In the meantime I had found an LLMD in Washington DC and was lucky to only wait 2 weeks.

My doctor called just prior to my LLMD appointment to tell me they found nothing but the neuro thought I may have some rare, rare disease but he doubted it. I can’t remember the name of the disease. Anyway they wanted me to pick up some urine bottles and the next time my heart raced to give them a urine sample… I never picked up those bottles and actually could have given him a sample right then and there because my heart never quit racing.

In mid July I saw the LLMD and he told me my first visit there is no doubt I have lyme and he was pretty darn sure I have Babesiosis. He was right on the money as I finally tested positive through Igenex for lyme and Babesia. I ended up having Bartonella Henselae too. We later learned that our other dog is also infected with Bartonella Henselae. We lost our older girl to lyme in August 04 and our other girl is still having problems with lyme.

I also knew without a doubt that my mother has lyme. I can’t count the number of times I called her when something happened that scarred me and she would say “Yes, I get that - it must be normal”. It took me a year to get her to our LLMD but she was finally diagnosed in August 04 and doing much better. My husband tested equivocal and was treated for 3 months. I seem to have a resistant case of Babesiosis and the Bartonella is still kicking my butt. However, I am doing much better than I was a year ago and will beat this.

July 03 - started doxy for lyme and waiting for test results

August 03 - Started Babesia treatment Mepron and zithromax

November 04 - added artemisinin for babesia

January 04 - Felt pretty darn good so we started hitting the others with ceftin, biaxon and continued artemisinin.

April 04 - Babesia back resumed mepron, zithromax, continued artemisinin

October 04 - Babesia/Bartonella still a problem changed from zithromax to Ketek continued mepron and artemisinin

December 04 - Increased mepron to 3 tsp per day, continue ketek and artemisinin, added flagyl and bactrim (sp). The protocal is 10 days of mepron, ketek, flagyl, artemisinin. Then 10 days of mepron, ketek and artemisinin. Then 10 days of bactrim and repeat protocal.
Hi all....know I've been around for a while but like Jules just never got around to posting my situation up here for everyone. So here goes...

28 was living in Madison, WI pre-lyme....moved home to my parents in Hastings, MN b/c couldn't live on my own any longer this past making treks to Madison when able to. Hoping to move back to Madison for good in the next 6 months.

Applied to social security for disability in 6/05...still waiting for their decision. But have been awarded long term disability from my past job. So that's a definite god send.

Am seeing a llmd in Springfield MI....Dr. Charles Crist.

Have been dxd with Lyme twice -

AFter trip to east coast with my family at age 15, began getting sick/pain a few months later. Now remember had a big swollen red spot on my shin...didn't look like a bulls eye rash at all. But all tests through 1991-92 were negative or indeterminate but after battling for a year a doctor finally agreed to treat. Lyme went dormant. Began relapse 3 years later with onset of symptoms with increasing regularity over next 13 years, until becoming acute this past March in an alarming fashion starting with Optic Neuritis in both eyes. All of these symptoms and episodes at the time were overlooked as lyme related, and were sadly only looked and treated as seperate events. Including:

Colds, flus, and sinus infection after sinus infection, too numerous to count.

2 boughts with mono (1997, 2000) that each lasted 6 or more months causing me to lose 2 different jobs!

Dxd with Hypoglycemia in 2000.

Dxd with Raynauds syndrome in 2001.

About 15 months of strep (onset 2002), case after case of strep in a row leading to tonisl removal at age 27 (2004) - requiring 2 seperate emergency surgeries to stop the bleeding and a loss of another job due to slow healing and recovery!

4 months of reoccuring pink eye (up till then had never even had pink eye!) leading to a dramatic loss of vision in both eyes upon waking up one morning in 3/05 leading to a diagnosis of Optic Neuritis in 4/05.

EEG/VER (visual evoked potential) testing confirmed episode of Opitic
Neuritis in 4/05, forget what it's actually called but it means i have semi-permanent damage to communication highway between eyes and my brain. docs don't know if or when it will ever heal.

Tested for Lyme using Elisa/Titer...over 4 different times from 2/05-5/05 all came back negative.

Spinal Tap done (4/05) all normal....less than 3% of people with Chronic Lyme will test +

MRI scans of brain/c-spine in 3/05 showing multiple areas of extreme dymelynation of white matter in vision centers, speech, as well as cognitive areas. Had to some doctors suggested MS,would have been diagnosed with it but my family wouldn't accept it so convinced me to see Dr. C in 5/05.

Then I finally tested positive after sending for results from Ingenex labs. Postive in both IgMs ( *for bands 18, 23-25, 28, 30, 31, 34, 39, 41, 45, 58, 93)and IgG's (*for bands 30, 31, 39, 41, 45, 58, 66, 93) which meet CDC requirements plus an extra 5 bands or so! So much for all the other docs being right about being negative for Lymes and having MS.

Dxd Chronic Late Stage CNS Lyme in 5/05. Don't know if have any of the coinfections as didn't have money to test for them, but llmd is treating me as if have them. When I go to visit his office again in March am going to do tests finally and see if that's part of the problem to why i am not getting better faster.

Dxd with Hypercoagulation.
Dxd with Chronic Instestinal Yeast...ongoing treatment of Nystatin.
Dxd Neurotransmitter Deficent with almost non existent levels of Seratonin, Dopamine, Norepinephrine, Epinephrine. On Amino Acid Protocal for Non-Parkinson Related Diseases.

Began treatment in 5/05....treated with 200mg Doxy 2 bid...3 days later Herxed for 4 weeks. 6/18 restarted Doxy at 100mg 1 bid...1 day later Herxed for 1 week...this is how my pattern has been for all orals since beginning of treatment. Herxes left and right. Have been on Zithro, Doxy, Flagyl, Clindamyacin, Biaxin, Quinine, Hydroxychloroquine, and 3 rounds of IV through a Hickman Port; Rocephin 1 round and Primaxin 2 rounds. Both of these had to be pulsed as well since I couldnt' tolerate them. Am currently on Ceftin, 1/4 of a 500 mg tab every other day. All my body will handle. Any more than that and I'm in a herx for a week or more. Still have a long way to go.

Anyway here's a list of symptoms too ~

chronic, severe fatigue and exhaustion
swollen, aching, stabbing pains in all joints (varies from day to day where)
cracking/popping joints - chronic pain
sore/stiff/popping jaw almost like TMJ
bruised, painful muscles all over body
heart palpatations
chest pains
impaired gait (sometimes)
severe stabbing random pains (trunk/head/stomach/spine/etc)
intense, chronic headaches (blinding stabbing pains/pressure)
impairment of muscle coordination
loss of short term memory (cannot remember events sometimes from 5 mintues ago!)
loss of ability to problem solve/make decisions (produces anxiety attacks)
loss of ability to remember correct words/recall
saying/writing wrong words/letters (mixed up or entirely wrong!)
cannot follow conversation becomes to overstimulated/complex for me
inability to concentrate
loss of vision in both eyes (gradually came back - now have multiple images/floaters/auras/after images/grainy-fuzzy vision in both)
chronic sore throat
decrease in balance
motion sickness to the point of throwing up when in car....hence no more driving for me.
itchy all over (continue to do all the detox I can all the time, and yet still i itch.)
sensitive points of skin/body
buzzing/ringing in ears, throughout entire body
numb/tingly feeling/pain throughout extremities/head
red spots/blotches on all joints after bath/shower/stress
swollen hands/knees/ankles, very red/painful/mottled
change in taste, decrease of smell
extreme thirst
hair loss/thinning
photosenstive/sound sensitive (to the point of wearing ear plugs to run water for a bath sometimes!)
nausea, almost constant
mouth ulcers
nose ulcers
low body temp (96.8 - 97.9)
some days high fevers (101-103)
sudden onset of chills
hot/cold spots (most times one side of bod is cold/other is hot!)
burning or icy spots..feel like a dime size spot is on fire or frozen (varies on body)
chronic cold feet/hands causing pain and discoloration
severe pain in heel of both feet, unable to stand for more than a few minutes
insomnia - when can sleep only fitful for 2 hours in a row
night sweats
vivid dreams/nightmares
muscle twitching/electric charges in legs/arms/neck
tremors in fingers/toes/neck
twitching eye muscles
swollen glands
multiple allergies
extreme dry skin
numb arms/legs/feet/face (comes and goes, lasts hours or days!)
pressure in ears
stiff neck/grinding and swelling of vertebraes
burning/dry/itchy eyes
extreme mood swings
no patience
intolerable of exercise, alcohol, or sugar....increases severity of all symptoms ridiculosuly.

Could keep listing them off but these are the main ones....Anyway sorry this is so long, but felt motivated to actually cut and paste most of this from a post i put on the board months ago on a symptoms list thread and just update it a bit to what's going on now.

Can't wait for days when I feel just plain "crappy" agin rather than super extra crappy! This lengthy battle has so far cost me 3 jobs, more money than I can count, a good deal of my youth, and a few friends as well. Nasty business this Lyme...nasty indeed. anyway I am so glad to have you all on this board...don't know what I'd do without all of your support over th past months and in the future.

:) Shanna "shawna"

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